Caught in a trap…

I’m stuck. Chronically stuck, you could say. My body has been refusing to behave for months. I’m operating at minimum capacity & maximum exasperation.

My pain levels are high and brain fog is impenetrable, but I also have a variety of ‘bonus’ complaints. This is a thing my body seems to do when I am particularly run down. A change in medication from injectable to oral about 18mths ago resulted in some messed up test results late last year (I had been against the change, but hey, what do I know?). Around the same time I had a bad cold that would not shift (definitely wasn’t covid) and culminated in Labyrinthitis. I was fairly lucky with that as I didn’t have pain, but the vertigo & nausea stuck around for ages. Into the new year the impact of that med change has made all my Long Covid symptoms more pronounced. The fatigue was never ending, a few steps left my heart rattling & my lungs crying out for air. Add a uti that quickly turned into a kidney infection. Then the three weeks of treatment required to correct the impact of changing the delivery of that medication left me vomiting all day & unable to eat. That of course messed up my electrolytes and landed me in hospital hooked up to a drip to get me back in shape. All in all it has been rough and I have struggled to get anything at all done.

That’s where feeling stuck comes in. There are so many things I want to get done. From big career moves (finish the book) to everyday task (mop the floors) it feels like everything is on hold. I am so exhausted and sore and foggy brained that it really is baby steps all the way. I write to do lists that are never completed. Every task takes a ridiculous amount of time. Proof reading each email you send three times cuts into available working time. If I put some washing in the machine, I need to rest. Some days a shower will be all I can manage. Spend a day out of the house and I need two or three days to recover. The ‘to dos’ get longer, the ideas go unexamined and I am trapped by all the unfinished everything.

It’s impossible to break free. There are things that could make my life easier, but they are of course costly. Usually a person could take on extra work, get a side hustle, but I can’t keep up with the bare minimum. If one has a deadline they could work all night. However, I can barely get through an afternoon without a lie down. Pushing myself to keep going not only results in less than my best work, but also puts me out of work entirely for days. Chronic illness pens me in. I can’t afford to buy the services & items that would make my life easier. The lack of those things contributes to worsening symptoms and limiting my ability to earn. See how it goes around & around?

I also feel welded to the spot. There are jobs I would love to accept, projects I badly want to complete, but I just don’t have the capacity at the moment. Thus, my career feels stagnant, it is heart wrenching to so badly underperform. My life is similarly entrenched. I want to see more people, have nights out, try new things. Of course, I can’t. My body simply will not allow it. I am so tired of saying no or rescheduling. It’s a no win situation my mental health suffers from being home alone so much. My physical health declines if I do too much. Again, the balance seems impossible to get right.

Finally, there is the mundane. I’d really like to have an empty washing basket. I want to be able to spend a day tidying the spare room. Instead, I do ten minutes a day for weeks and never quite get it done. It would be lovely to go out spur of the moment; but having a shower and putting on clothes can wipe me out. I never thought I would long to walk to the corner shop for cat food. Yet, here I am stuck in my house unless I can get a taxi or a lift. It is exhausting and demoralising. There is no easy way out. All I can do is wait and hope that I feel a bit better soon. I ran out of patience a long time ago.

An hour glass with iron filings

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Little Green, have a happy ending…

It recently came to my attention that Joni Mitchell’s masterpiece, Blue is 50 years old. I find it incredible that words written half a century ago still cut right to the heart of me. I discovered Joni when I was around 12 and 28 years later I still love slipping into the blue. This week I have found myself listening to one song in particular on repeat. It’s Baby Loss Awareness week, as I see others share their own losses I find comfort in Little Green.

Little Green is perhaps the most perfect song ever written. I didn’t know precisely what it was about on first listen but I still got it. It still wrapped me in it’s magical sadness & hope. Green immediately struck me as a beautiful name for a girl. I decided there & then that should I birth a girl, I would indeed call her Green.

Little green by Joni Mitchell lyrics in background on green ribbon

I’ve been listening to that song since my teens. Dreaming of the tiny bud who would be my Green. In the passing years I have learned the true meaning of the song, talked to the Green nestled inside me & discovered the reality of loss. Joni was writing about a different, but similar grief. Her words remain entwined with my experiences.

When I dream of a daughter she is a gypsy dancer. All tangled red hair & high spirits. She likes the scent of pine trees & bracing herself against a strong, cold wind. She’s quieter than me, but chatters when excited. I read her everything I loved as a child. Take her to the places that made me feel big things. Her childhood is filled with standing stones & patterned tights & Joan Lingard books & seaside air & empowering women & red liquorice. She is exhausting, exhilarating & exquisite.

When I wake she is a girl in a song. A fantasy my mind summoned; fuelled by 70’s folk poetry and my deepest longing. Listening now is a sweet agony. Pressing my sorest spot because I can’t resist the beauty of it all. The intro wrapping me in the blanket my babies never had. The lyrics bringing the sketches in my head to life.

I’m glad we’re beginning to open up about pregnancy & baby loss. I hope others won’t have to spend so much time alone in their heads with their babies. It helps to talk about losses. To give solidity to those tiny unlived lives. It is such an enormous relief to have the world acknowledge our children.

Adult hand holding a child’s hand on green background

Be running up that hill…

Chronic illness is great at kicking you when you’re down. Lamentably, it also likes to give you a dunt when you’re flying too. It would be taxing to say which is worst, but falling from a height certainly hurts.

That was me last week. I was on a lovely break in the cutest cottage by sea. Soaking up the calming sea side views and thoroughly enjoying time with my nephew. The sun was out, we headed to an incredibly beautiful beach. I watched the boy run around having the time of his life. I paddled in the refreshingly cold sea. Took deep breaths, listened to the lapping waves & felt happy.

Tide coming in on st Cyrus beach

As it edged towards late afternoon people started to leave. I began to worry about the hill I’d have to climb to leave the beach. As we packed up I saw people stroll up. I knew it was going to be a problem.

And I was correct. That little sand dune fucked me up. I started trying to ascend it alone, but quickly realised that wasn’t going to happen. It’s hard to get your footing on slopping sand. Even harder to get purchase in moving ground with a walking stick. With every step the sand slid down the hill pushing me back. It was all working against me.

Foot with black painted tie nails on the sand with wave approaching

My sister saved the day. She let me lean on her, literally & half dragged me up that hill. Every step was excruciating. My knees felt like the where going to explode. My back, wrists, elbows & shoulders were all screaming. I couldn’t catch a breath, my lungs felt as though they were filling with the sand I was slipping on.

That little sand dune appeared to go on forever. The bench at top a promised land I’d never reach. Listen, the pain was bad, it wasn’t the culprit of tears at the summit. As my sister helped me struggle I saw my 3yr old nephew gamble up the slope. An old couple comfortably passed us. A nice man with a very concerned look stopped to ask if he could help. I focused on breathing whilst my little sister pepped talked me up that hill. I repeated ‘you’re nearly there’ in my head and tried my upmost to hold back the tears.

When I finally had my bum on that bench my nephew ran to give me a cuddle. The tears started streaming. I looked at the beautiful view as I silently cried. I didn’t want to make eye contact with my loved ones. I didn’t want my little rascal to see me in this state. I recognised the concern in my sister’s voice & the love in the silent shoulder my Mum offered to hold me upright. As much as I loved them for it, I hated that I have to be this way.

View from hill over a beach.grass & wildflowers with sand past leading down to the blue sea

It was another one of those ‘how did I get here’ moments that chronic illness brings. I never imagined it’d take a support team to get me up a hill at 40 years old. I’m not a person who likes to be publicly vulnerable, yet here I am. Regularly fragile & exposed as I try to scratch out something close to a normal life. I felt guilty and embarrassed and pathetic and grateful and burdensome and scared and loved. All crashing over me with more force than the waves below could ever muster.

I concentrated on the nature around me as fought to compose myself. I attempted to ignore the curious looks from strangers & the pain coursing through my body. I listened to the the waves and birds. I let the blue horizon pull me through all the heavy implications placed on the people I love. I dried my eyes. I got back on my feet.

The day continued. Me, making my way slowly behind the others. Stopping to rest. Taking pain relief. Zoning out when we got back in the car. It was all so much bigger than that stupid hill. I was hoping I hadn’t distressed the others. Dreading the pain that I knew was still to come. Feeling sad at the thought that I probably wouldn’t ever return to that blissful beach.

It is painful to accept one’s limitations. I find it incredibly hard to let more & more go. I hate that I’m always the one who has a problem with the plans. I despise that my difficulties are so visible. Gasping for air at checkouts that take a fraction too long. Sitting on floors when there’s no seats available. Calling in advance to check if my malfunctioning body can be accommodated. I don’t like being on display, don’t want to answer questions about my stick, shake off the exasperated sighs or smile at pitying strangers. No matter how kindly meant, I’d rather be suffering in private. I’m exhausted by the knowledge that I’ll pay for every slice of fun. Even more so by the battle with myself to keep reaching for those good times anyway. Most of all I’ll forever regret how much this impacts all the wonderful people in my life. I wish I could stop being a hindrance. I never want them to have to worry. I appreciate every tiny thing they do for me, but I still wish they didn’t have to.

This is chronic life. It’s not just the pain & illness. It is all encompassing. Lots of the time the only way to deal with that is to push it to the very back of your mind. These moments of brutal clarity never stop taking me by surprise.

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Is it really ok?

‘It’s ok not to be ok’. I can’t remember when it started, but it certainly picked up steam. It’s now the standard social media friendly, I support mental health awareness tag line. I know it is well intentioned, but increasingly, it doesn’t ring true.

Of course, in theory, it is true. It is normal to experience mental health issues. It’s fine to admit that you struggle. It is important to normalise mental illness. If you say it out loud, I am not ok, what happens next? If you’re lucky someone listens; someone cares. Maybe they ask what you need. Perhaps you get that help. The first time. Maybe.

It’s ok not to be ok in orange text with green quotation marks

What happens when the person you tell has no idea how to respond. What if you spill your guts to a doctor who doesn’t take you seriously. Or who does want to help you, but only has waiting lists to offer. Around 70% of those referred for mental health assessment in Scotland wait at least 18 weeks*. That’s a very long time to feel helpless, especially when there is no guarantee of treatment. What do you when the not ok doesn’t go away? Or if it keeps coming back? You try really fucking hard to be ok. You do the therapy and the meds and the hard work. It takes a long time. It’s gruelling and painful. All the time you know lots of people aren’t getting any treatment. You feel guilty that your receiving assistance that others aren’t. Even more so when the help hasn’t helped. You’re aware that the people who love you are scared. Your hurt hurts them. They want ‘ok’ as much as you do.

And you want it for them. When it slips from your grasp it’s harder to say it again. People have their own lives. Sometimes they might be struggling. Or they may be fabulous; enjoying some well deserved happiness. Everyone has stresses and responsibilities. Our lives keep us busy with the good and bad. Everyone must earn a living, manage their relationships, have fun. Who wants to be the person who complicates that? Not me.

When you’ve already done everything you’re supposed to do it’s hard to know how to banish the cloud. If the expert advice doesn’t do the trick how can well meaning friends help? Even when you really want to reach out there’s always an impediment. You don’t want to add extra strain when they’re in trouble. Nor do you don’t want to darken joyous life events. Sharing begins to feel less a problem halved & more a problem spread.

Very few mental health problems are a simple fix. None of the big issues in life are that black & white. When you fall back into the grey it’s terrifying. Especially when you know you’ve already had your shot. Ask anyone who has tried to access mental health services after discharge. It’s almost impossible. Drs will say you aren’t sick enough for referral. The NHS lacks the resources for early intervention. Access to talk therapy is limited. Almost 40% of those who received treatment reported that they did not have sufficient sessions**. Cognitive Behavioural Therapy is by far the most frequently offered intervention. Not because it is the most suitable, but because it is the cheapest & easiest to administer. Recovery is hard enough with appropriate support. When treatment is bungled it can do more harm than good. As already stated, re referral is doubly hard.

While you wait or fight for professional help (that may never come) your life is disintegrating. Friends who were initially supportive fade away when you never quite get all the way better. Employers sprint. They’ll talk a good game; train a mental health first aider or make a donation. Test their commitment with sick time or requesting accommodations & watch them run. You are left with the people who care enough to stay. Your predicament remains. You don’t want to worry them. You don’t want to ruin anything or be the thing that tips their bad news scale. It’s never the right time. We all want to believe that catch phrases are enough, but buzzwords will never cut it. What happens after I say I’m not ok?

The truth is, more often than not, nothing. The pandemic has only increased strain on an already buckling system. I don’t have all the answers. I do know that a cute Instagram post during an awareness month isn’t it. We need huge institutional shifts. More money, more training, more oversight. Our political representatives need to know that we want action. 1 in 4 adults will experience mental illness in their lifetime. Telling them that’s ok isn’t enough. We have to be advocates.

If someone in your life is suffering without help you can contact your Mp & express your concern.

Find out how long waiting lists are in your area & ask you Mp what they’re doing about that.

Stop voting for people who are actively defunding our health service.

Be proactive. Ask loved ones what specific help you can provide.

Use your social media to contact politicians directly. Ask questions publicly. Embarrass those whose voting records go against their constituents interests.

Accompany a friend to appointments if they require support. Insist that interactions are recorded in medical records.

We have to demand more of ourselves and of those with the power to make changes. Truthfully, it doesn’t feel ok, not to be ok.

Open shouting mouth with the text your voice has power

* Information Services Scotland ** SAMH

Another little bit gets lost…

I am not ok. I’m never really ok, but right now, I am especially not. Long covid is ravaging my life. Six months since testing positive & no improvement in the ‘left over’ symptoms. I’m really scared that I am going to be stuck like this indefinitely.

The breathlessness & tachycardia are relentless. The slightest exertion leaves my heart racing. I can’t stand long enough to brush my teeth. Moving from room to room requires a sit down recovery period. My pain & gastric symptoms have all been intensified. They show no signs of easing. Fatigue is overwhelming. My brain often feels like mush. I lose track of what I am saying mid sentence, I need lists & alarms to remember anything. I cannot get anything done.

Pulse oximeter  with heart rate at 180 & oxygen 95

Keeping up with normal life admin is a constant struggle. Cooking, cleaning, laundry, washing my damn hair have gone from difficult to near impossible tasks. Getting dressed is a mission. Trying to work is a lottery. Maybe today will be the wonderful day my brain & body both allow productivity. More likely, I will spend a week doing ten minute spurts of writing. What used to take a morning now feels like completing my magnum opus. I rarely have the energy to leave the house. A trip to the drs or an afternoon in company takes days to get over. Everything hurts massively all the time. I’m exhausted all the time. My heart pounds & my breath escapes me. Eating more often than it results vomiting. My life is getting smaller & smaller. I’m frightened.

There are no good days. Never an opportunity to catch up. I’m in a continual state of anxiety over all the things that never get taken care of. I feel useless. Stuck. I wasn’t in great shape to begin with. There were always limitations, but now they are endless. I can’t see any solution; there is no one else to do what I can’t. Even if there were, it would decimate my mental health to be that reliant.

Doctors don’t have the answers. Nor do they have the resources for many of the treatments they’d like to offer. Every referral is waiting list. My existing conditions are running riot & symptom flares do not respond to previously effective interventions. It is exceptionally hard not to feel hopeless.

Ly is wearing sunglasses, face mask &  hospital gown and standing in front of x ray sign

I’ve been here before. Each time I’ve reached a new spoonie milestone it has been hard.Realising the pain would never entirely go away, each new diagnosis, having to use a walking stick. They all took time to accept. More time to learn how to manage. Every time I add something to the list of things I simply can’t do anymore it hurts. I’ve grieved so many versions of myself. I have long let go of the idea of a normal life. This feels different. It’s not an adjustment, it is shifting most of my life into the can’t do column. No one can tell me if this will ever get better. Or worse.

It’s testing me on every level. Keeping my mental health afloat is getting harder. I have no control over this. If I push myself I feel worse for longer. I am helpless and useless. My head has no off switch. I fret about the mounting piles of unattended business. My life feels simultaneously hectic and ground to an absolute stop. The stress is too much. The pain is too much. The fatigue is too much. Every inch of living feels too hard.

All the while, life goes on. Bills need to be paid, grass cut, deadlines met. I have responsibilities & commitments. Covid isn’t anyone’s fault. I am acutely aware of how many have lost more. As guilty as I feel, that doesn’t make this any easier. I think maybe I needed to say it out loud. I am no ok. Not even close.

The words I’m not ok on black background

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Oxygen for India…

Covid 19 has been hell. We’ve made sacrifices. We got ill, lost people, missed people, missed life. We have suffered, but we have almost made it through. Even in our worst times we have privilege. So much privilege.

Throughout this nightmare we have had access to excellent medical care & now vaccines. Many of us have had safe houses to lockdown in. Food, clean water, the ability to stay in touch with our loved ones. It doesn’t negate the bad, but it does make us incredibly lucky.

Now that we are close to escaping this pandemic we cannot abandon those still being ravaged. We have to help. India is in dire straits. We, in the west are good at taking what we want from other cultures without asking & without giving anything in return. It is past time for us all to do what we can to fight Covid in India. Please give whatever you can.

Oxfam India Covid Appeal

British Red Cross

Action Aid

Oxygen for India

My sign is vital, my hands are cold…

CW: Self Harm

Lately I’ve been having regular checks for the heart rate thing. The nurse who took my blood & vitals last week was really familiar. I had that strange I’ve definitely met you feeling, but also knew I didn’t know her, know her. I couldn’t place her at all until a loud clatter startled her. Her sharp intake of breathe shot me back in time.

She was the nurse I stunned with my self destruction in this same hospital many years ago. She either didn’t recognise me or correctly judged it best not to indicate that she had. She was friendly & kind, but the sound of that inhale shook me. I was back there, covered in blood & guilt.

I can so clearly remember walking into that triage room. Concisely explaining why I was there & seeing the doubt in her eyes. I could tell she thought the large towel on my arm was overkill. I knew she was weighing up how to nicely dismiss me. I was too tired to do anything other than unwrap the makeshift dressing & expose the truth.

Foggy picture of cars outside hospital. Words ambulance only painted on ground

The inner layers were blood soaked & the final one stuck to the wound. When I yanked it off with same the lack of self care that had led me to that room, she gasped. An entirely involuntary expression of what; shock? disgust? fear? I couldn’t discern, but I knew it wasn’t good.

The speed that she whipped through the triage routine was more about her discomfort than mine. I had long lost my objectivity. I sought treatment as a means of calling a halt to that cut. I had given up seeking enough. I knew that enough was a lie. When I looked at my arm I really couldn’t tell anymore if it was any worse than anything else I had done to myself. It was just another failed attempt to carve out some peace.

Peace that I knew was never coming. I already felt stupid & ashamed & so horribly guilty. For all the usual reasons and now also because it was obvious I had ruined this women’s night. She hadn’t bargained for my level of determined self loathing; I’d upset her. I felt selfish for not being more clear. I shouldn’t have allowed anyone to be caught off guard.

I wanted to be better. Do better. I wished I could give this nurse & everyone else the explanation they needed. I yearned to be somewhere else. I didn’t even want to do this anymore. My blades had long since lost efficacy. I could never cut deep enough. Never shed enough blood. The quiet I needed was evermore elusive. I was desperate and so fucking tired. Yet, I still couldn’t stop.

As I waited for her to finish with my blood pressure I was stuck in the past. Mired in the dread. Reliving the experience of having my arm stapled shut whilst already planning the next assault. Knowing I couldn’t escape the nagging voice in my head that insisted I must cut. I must earn any rest. I had to atone for sins I wasn’t able to articulate. I had to release all the fetid emotion with my blood.

When I left I felt blessed. And cursed. Blessed that I was wrong. I did escape. I have hushed that internal need for penance. Cursed because I still haven’t silenced it. There will always be triggers pulling me back. Days when my scars itch to be opened. You can’t play with fire & not get burned. The magic is remembering I know how to make it stop. I just have to wake up every day and choose this new, better life. Easy, right?

Black and white photo oh plus size woman looking at scarred arm

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Nothing is like it was…

This month’s insomnia has been sponsored by infertility. My inability to reproduce occupies far to much space in my head & life. A big problem with healing from pregnancy loss is how taboo the topic remains. Things have improved a little, but on the whole I still feel like most people do not want to hear about it. Some have very valid reasons to shy away from those conversations. Others merely feel uncomfortable. Rightly or wrongly that leads me (& others) to feel we must keep it to ourselves.

Obviously I have attempted to combat the silence both in my writing & my life. I know it helps those who have lost & those around us to be more open. My own attempts to get on with it quietly were incredibly harmful to me. Still, there is so much that I have not shared. There are important people in my life that I’ve never spoken about my miscarriages or infertility with. It’s not a secret, but many things have prevented me from feeling able to discuss how I have felt.

Beyond emotion there are so many details that aren’t revealed. Common place aspects of miscarriage that are only ever referred to in hushed tones by those who have been there. There are various behaviours that I kept to myself because I feared they veered towards crazy. I’ve subsequently discovered they’re common rituals. Humans find comfort where they can, it would have been less frightening to know I was normal.

Most of all, the secrets are weighty. I feel laden with the obligation to keep the unmentionables shrouded. I don’t want to feel this way anymore. I definitely don’t want others strapping on this load. I need to let some of it go.

I say some, because, there are people & realities I cannot change. Crashing against solid stone will bring me no comfort. Thus, I want to reveal the parts that I can with this kind & ultimately faceless audience. Hopefully it can help others who feel burdened by conventional decorum. At the very least I may finally feel lighter.

I fear you’ll judge the box I’ve kept for 20 years. Adding items that others have hinted should not have been saved. Very few know it exists, the suggestion that it shouldn’t have has always hurt. I don’t think the positive tests from each pregnancy are gross. I’ve still felt the needed to hide them. Saving hospital bands & paperwork makes sense to me. I don’t understand why wanting to hold onto something (anything) connected to my children is morbid. I’ve been assured it is.

Positive pregnancy tests
Document requesting blood pregnancy test

I’m embarrassed of the few new born pieces I dared to purchase. So often I’ve seen childless women with tiny socks stashed in a drawer portrayed as lunatics. Dangerous, even. The type who might steal your baby. I hide the pregnancy, early years & baby names book. They’re packed away with the baby grow I saved from my niece’s early days. I thought one day I could frame pictures of them both babies identically clothed. Yes, the frame that would have housed those photos remains box fresh alongside. I have no need for this paraphernalia, I just can’t bear to throw them away. I worry this will be viewed as pathetic. Another crazy lady whose biological clock went bang. They were logical purchases when I made them. I was pregnant. When those pregnancies failed I was certain the next one wouldn’t.

I’ve never shared the pictures I took when my stomach started to change shape during my last pregnancy. I wanted to show off that development, but I didn’t think I was allowed. At the time it would have been tempting fate. Afterwards, there is instant unease if the subject is approached.

ly is wearing a red dress and taking a side on mirror selfie

Then there are the memories that will never leave and are never uttered. Unpleasant shards of the mess no one wants to witness. The exact tone a nurse used when she told me it was for the best because I was so young. Or the ice cold that runs through me everytime I see an examination table with stirrups. The fact that a miscarriage is more than blood and that more must be dealt with. I don’t talk about sitting alone in my bathroom trying to decide what to do with the bloody fragments of the child that will never be. Or the torture of bleeding a little & then having to wait. Clinging to hope through blood tests and scans. Only to be told you’re technically still pregnant, but it’s no longer viable.

Risk of infection, prolonged bleeding, the extent of the pain are all things I only become aware of through experience or via other women in private groups. We’re all so squeamish about the reality of pregnancy loss. I think it’s entwined with the patriarchal disgust of ‘female’ bodily functions. The same whiff of shame hangs over the process. I have felt I must not reveal anything too corporeal. Almost as though declaring the facts of my physical condition is gratuitous. Likewise, I have restrained aspects of emotional responses for the comfort others. It simply isn’t sensible to treat such a traumatic event with polite moderation. The inhibition has damaged me.

The older I get the more I seek clarity. Much of the pressure that society brings to bear obscures my view. I don’t want to submit to it anymore.

Pale white feet standing in Loch with pebbles

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